They were happy and excited. They had a daughter, Addison, now 2, and wanted to have a boy. Now they were going to get, as Andy put it, “two for the price of one.”

Still, they were apprehensive. An ultrasound examination revealed that one of the twins might have had some fluid building up around his brain, a malady that would require a surgeon to install a shunt in his brain – serious surgery for a newborn.

When the day came – July 16, 2018 – and Katie went into surgery at York Hospital to deliver the twins via C-section, they were worried.

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The doctors delivered Jamison first. Then Jackson. The doctor placed Jackson in his mother’s arms, but just for a minute before whisking him away. The doctors crowded around Jackson, examining him. Andy remembered feeling that something didn’t feel quite right. He peeked over the doctors’ shoulders to get a better look. Katie, still kind of foggy from the surgery, asked, “What’s going on?”

He worried that the doctors’ concern might have had something to do with Jackson having excess fluid in his brain. It turned out he did not and that his brain was fine.

A doctor explained that Jackson would be going to the neonatal intensive care unit, that he had, in medical terms, what was called an imperforate anus.

Andy wasn’t sure what an imperforate anus was; he had never heard of it. So when he went to talk to family in the waiting room, he Googled it on his phone. In layman’s terms, Jackson was born without an anus. It is a fairly rare defect, occurring in one out of every 5,000 newborns in the United States, according to the National Institutes of Health. Some instances of the defect are relatively minor and easily treated. Others are not. Jackson’s affliction was one that was not.

Andy had a lot of questions. What kind of surgery would Jackson need? How complicated is it? Can Jackson survive it?

He also asked himself, “Why us? Why is this happening to us?”

The doctors at York Hospital referred Andy and Katie to a doctor from Johns Hopkins. The doctor also practices at York Hospital and just happened to be in the building. He told the couple that they were going to send Jackson to Hopkins that night and perform surgery.

'Heartbreaking' surgeries and complications

Jackson Kuhn has endured multiple surgeries to correct that rare defect that left him without an anus.(Photo: Submitted)

Andy and Katie, understandably, were freaking out, in Andy’s words. Katie, still recovering from the C-section, wanted to go to Baltimore to be with Jackson. She was released from the hospital a day early and joined Andy in Baltimore as Jackson came out of surgery. The surgery, the first of several needed to correct the defect, went well, and a week and a half later, Jackson joined the rest of his family in their Windsor home.

When he first came home, Andy said, everything looked great. He would need two more procedures to repair the defect; that’s how it works usually.

Then Jackson took a turn. He wasn’t eating as much. He wasn’t well and they wound up at York Hospital, where Jackson was found to be dehydrated. The doctor at York Hospital sent him to Hopkins. Jackson had a twisted bowel, and the doctor told Andy and Katie that surgery needed to be done as soon as possible, that the malady could kill him.

Jackson underwent four hours of surgery and was placed in the NICU at Hopkins. In the NICU, overnight, they left his incision open, covered with a silo-like device, intended to promote healing and see whether the bowel would come back to life. It didn’t. He had more surgery to remove much of his colon.

“It was heartbreaking,” Andy said. “He was all wired up.”

The struggle to keep up with costs

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Jackson Kuhn was born without an anus and has spent much of his young life in hospitals. He is home now, cared for by his parents and visiting nurse Jenny Pierce.(Photo: Mike Argento, York Daily Record/Sunday News)

He still needed more surgery and tests. Problem was, since Jackson was being treated in a hospital in Maryland, some of the costs weren’t covered, his father said. Hopkins transferred his case to the Children’s Hospital of Philadelphia, making it tough for his parents to visit him during his months of treatment and recovery.

Instead of seeing him every other day, an hour drive away, they had to settle for a drive twice the distance to see him on weekends. Both Andy and Katie work – Andy, 28, is assistant athletic director at York High, a proud member of the Bearcat family, and Katie, 24, works at a daycare while preparing to study nursing.

So far, the costs not covered by insurance have totaled about $25,000. A friend at York High started up a GoFundMe page to help the family pay for the expenses.

After the GoFundMe page launched, a local TV station did a story about Jackson. When the story was posted on the internet, the comments were mean. This isn’t news, one said. Others criticized the family for publicizing their child’s ordeal. It wasn’t nice, but Andy points out they did not seek the news coverage and they didn’t agree to it for any personal gain. They just wanted people to know about this rare affliction and how it affects a child and a family.

But the Kuhns have also received a lot of support from other parents dealing with the rare affliction. Andy recalled reading comments from a man who wrote that he had been born with the defect and now in his 70s, was fine.

Jackson's road to recovery

Jackson, right, is home now, spending time with his twin brother, Jamison.(Photo: Submitted)

Jackson is home now. He smiles a lot, and other than the tubes hooked up to him – one that provides nutrients directly to his bloodstream through a port installed in his chest since his digestive system is inoperable – he appears to be a normal infant. He plays with a stuffed animal and coos at his visiting nurse and laughs when she tickles him. He has a full head of hair, much more hair than his brother, a side effect of the nutrients he receives. "He's a happy guy," his father said.

He’s doing very well for such a tiny child who has endured so much surgery. He isn’t done with surgery and still faces a lengthy recovery. Fortunately, his father says, his prognosis is good, and he probably won’t remember any of this ordeal.

“It’s been something, but he’s doing very well right now,” Andy said. “He’s been through a lot.”